ANA Discussion Forum
General Category => AN Issues => Topic started by: Jackie on February 17, 2007, 02:23:54 am
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I was just diagnosed Feb. 5th, like other newbies, I am in shock and have a lot to learn and am glad to have found this forum!!! My AN is right side , exact quote from diagnosis " right cerebellopontine angle isointense T2 mass extending into right internal auditory canal. Mass likely impinges upon the exiting right 8th cranial nerve. 11 mm transverse x9 mm AP. This is Greek language to me since I have so much to learn and explore. I live in Oregon and am on LKaiser, however they do Not do any procedures within Kaiser, but refer out. So help me please with whatever suggestions anyone out ther has. I am a happily married 59 yr old young Grandma of 5 and want to be positive about the future and end this pity party soon! Thank-you for any help you can give me. Jackie
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Welcome !
and relex .. breath deeply ... everyone goes thu this "panic" stage!! :o Take your time and reasearch your options.. these tumors are normally slow growing (I bet your "friend" has been there for years) so another few months should make no difference.. your in no rush to do anything! it still at a smallish size, so you could just watch it and wait, surgery, or radiosurgery!...
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Hi Jackie and welcome.... and JoeF is right... just time for a deep breath.... we all truly do understand and here to support each other as best as we can.
Ok, I'll attempt the garbly translation for you. Anyone else want to chime in, please do.....
"right cerebellopontine angle isointense T2 mass extending into right internal auditory canal."
This means the AN is indeed on your right side, in the IAC, just peeking out to the CP Angle region..... so, it's peeking out but based on what is noted, not pressing on the brain stem, which is terrific
The 8th Cranial nerve is your vestibular/hearing (and balance) nerve, so, thus, an "acoustic" neuroma
"11 mm transverse x9 mm AP"
Ah, great news! it's considered small to medium, thus, highly treatable and worth keeping an eye on. 11mm = 1.1cm.
Now, the most note-worthy is this.... Acoustic Neuromas (AN's) are benign. Benign is a lovely word... truly. Also, it does not penetrate the brain itself. It may be pressing on it (MAY is the key word) but does not penetrate the brain.
So, overall... it's small to medium, highly treatable, may be worth keeping an eye to make sure there is no further growth. If you are having any symptoms such as balance issues, tinnitus, facial numbness, etc, these are the things you want to make sure you not to your dr.
There is much info out here so my hope is that you sit back with a cup of coffee (or your favorite drink), take a deep breath and read some of the info that is available out here. And please keep in mind that we all truly do understand. Many here are like you... just receiving their diagnosis, some that just had treatments for their AN's and some that had treatments a while ago and as you will see, life is certainly moving along for us...... :)
Again, welcome....... and know that we stand beside you and will help in any way we can. :)
Hang in there.
Phyl
I was just diagnosed Feb. 5th, like other newbies, I am in shock and have a lot to learn and am glad to have found this forum!!! My AN is right side , exact quote from diagnosis " right cerebellopontine angle isointense T2 mass extending into right internal auditory canal. Mass likely impinges upon the exiting right 8th cranial nerve. 11 mm transverse x9 mm AP. This is Greek language to me since I have so much to learn and explore. I live in Oregon and am on LKaiser, however they do Not do any procedures within Kaiser, but refer out. So help me please with whatever suggestions anyone out ther has. I am a happily married 59 yr old young Grandma of 5 and want to be positive about the future and end this pity party soon! Thank-you for any help you can give me. Jackie
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Hi Jackie and welcome! I know how scared and anxious you are feeling, but as Joef and Phyl have noted these AN buggers are treatable and benign. We are here to help guide and support you through this journey. Your first steps are researching and gathering info, this is a great place to start. It's nice to be armed with as much info as possible when meeting with your doctors and surgeons. I didn't have the opportunity to do that :(
I am almost 9 years post op and life is wonderful!!!
Sending hugs and keeping you in my thoughts and prayers!
Cheryl
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I just recently went through the exact same feelings your experiencing. I was diagnosed in November 2006 and am anxiously awaiting surgery the week of April 17. My first feelings were identical; scared, paniced, depressed, feeling like crying, but I got past that with the help of this great site. This is a great place to share your feelings with people who know what you're going through.
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Thank-you all for your helpful responses! I really didn't mean to sound like a baby, as I have always been a fairly strong woman. I guess I found my vunerability! Just to let you know, in July of 2006 I felt a blockage in the right ear, like I had been on a plane and needed that clearing once you land and was told by my Doc. to try plugging my nose and blow to see if that cleared! Hah, it didn't I was then referred to the ENT dept. who never called me for an appt., I was busy, put it on the back burner, till Nov. when I really was noticing a marked difference in my hearing, plus this rustling sound constant in my ear. Long story short hearing test confirmed that drop in hearing and the MRI which also confirmed the AN. Anybody out there have any procedure in and around the Portland Oregon area? Again, thanks for listening, I read all of your discussions, and appreciate having you with me now. Hopefully I can be of some help and comfort to you too! Thanks again, Jackie
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Hi, Jackie:
Let me add my welcome and my sympathy for your situation, which all of us have been in, or we wouldn't be posting on this forum.
Panic is pretty much the normal reaction to an acoustic neuroma diagnosis, but time and some research will tamp down those feelings. Not that there is anything especially good about having one of these things inside your skull, but as your AN is relatively small and your symptoms fairly mild, you do have genuine cause for a certain degree of optimism. The main reason for optimism is the fact that you have options. From 'watch-and-wait' (everybody's favorite) to non-invasive radiation treatment (second favorite) to the least favorite, microsurgery, you will have various choices to make and you'll have the time to make them. That is a real plus.
Some of us (see my signature) were diagnosed with an already-large AN tumor pressing on the brain-stem and had no real option except almost immediate surgery (and follow-up radiation). You are somewhat fortunate to not be in that kind of crisis situation. You may well have to do something in the near or far future, but you have choices. I know you'll do your research, schedule your doctor consultations and ask questions all around, as you should. Use your time wisely. Make an informed decision based on facts, not fears. Meanwhile, we stand ready to offer you whatever help we can, not as physicians but as people who have been in your shoes, as it were. Please visit us often and feel free to post any questions or concerns you may have. Knowledge really is power.
Jim
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Jackie, I am a 65 year old Grandma and had my treatment a year and two months ago. Life is still as beautiful as ever. The "Why Me," stage will pass quickly for you. I can tell by your positvie attitude.
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Hi Jackie
I am almost the same age as you and was diagnosed with a 2.2cm AN pretty much the same way as you after having hearing loss and tinnitus . The AN was a quite a surprise ! After the initial shock of having a BRAIN TUMOUR!!!! my husband and I did a lot of research into treatments and finally decided on having Gamma Knife here in Sheffield UK. One of the main reasons for having GK was the fact that apart from some loss of hearing and tinnitus my symptoms were minimal and I felt fine. I am now over 21 months post GK and apart from a episode of headpain 8 months after the treatment I have felt fine and have got on with my life as usual.
My last MRI 2 months ago showed that the AN was shrinking slightly which made me very happy about my choice of threatment .
Your AN is quite small which gives you plenty of time to do your research into all the treatments available including watch and wait.
I agree with everyone else that the experience of the team doing the surgery or treatment is the most important thing. I wish you luck with making your choice .
Best regards Kat
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Welcome !
and relex .. breath deeply ... everyone goes thu this "panic" stage!! :o Take your time and reasearch your options.. these tumors are normally slow growing (I bet your "friend" has been there for years) so another few months should make no difference.. your in no rush to do anything! it still at a smallish size, so you could just watch it and wait, surgery, or radiosurgery!...
Thank-you Joef for your great advice! It's nice to know that my initial reaction is somewhat normal! I look forward to learning more about this intruder and value all of your input! Thanks again,
Jackie
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Hi Jackie and welcome.... and JoeF is right... just time for a deep breath.... we all truly do understand and here to support each other as best as we can.
Ok, I'll attempt the garbly translation for you. Anyone else want to chime in, please do.....
"right cerebellopontine angle isointense T2 mass extending into right internal auditory canal."
This means the AN is indeed on your right side, in the IAC, just peeking out to the CP Angle region..... so, it's peeking out but based on what is noted, not pressing on the brain stem, which is terrific
The 8th Cranial nerve is your vestibular/hearing (and balance) nerve, so, thus, an "acoustic" neuroma
"11 mm transverse x9 mm AP"
Ah, great news! it's considered small to medium, thus, highly treatable and worth keeping an eye on. 11mm = 1.1cm.
Now, the most note-worthy is this.... Acoustic Neuromas (AN's) are benign. Benign is a lovely word... truly. Also, it does not penetrate the brain itself. It may be pressing on it (MAY is the key word) but does not penetrate the brain.
So, overall... it's small to medium, highly treatable, may be worth keeping an eye to make sure there is no further growth. If you are having any symptoms such as balance issues, tinnitus, facial numbness, etc, these are the things you want to make sure you not to your dr.
There is much info out here so my hope is that you sit back with a cup of coffee (or your favorite drink), take a deep breath and read some of the info that is available out here. And please keep in mind that we all truly do understand. Many here are like you... just receiving their diagnosis, some that just had treatments for their AN's and some that had treatments a while ago and as you will see, life is certainly moving along for us...... :)
Again, welcome....... and know that we stand beside you and will help in any way we can. :)
Hang in there.
Phyl
Thank-you Phyl, I really appreciate your interpreting my diagnosis. My ENT wasn't qite as explicit so you have helped. I have decided to "watch and wait" as I certainly don't feel informed enoght to make a wise decision. Being on an HMO, like Kaiser, I need to find out who all they would contract out with since Kaiser does none of the procedures itself. It is all overwhelming, but I feel that all of you have been a great help so far, and appreciate you so very much! Thank-you and I am keeping all of you in my prayers! Jackie
I was just diagnosed Feb. 5th, like other newbies, I am in shock and have a lot to learn and am glad to have found this forum!!! My AN is right side , exact quote from diagnosis " right cerebellopontine angle isointense T2 mass extending into right internal auditory canal. Mass likely impinges upon the exiting right 8th cranial nerve. 11 mm transverse x9 mm AP. This is Greek language to me since I have so much to learn and explore. I live in Oregon and am on LKaiser, however they do Not do any procedures within Kaiser, but refer out. So help me please with whatever suggestions anyone out ther has. I am a happily married 59 yr old young Grandma of 5 and want to be positive about the future and end this pity party soon! Thank-you for any help you can give me. Jackie
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Hi Jackie,
My answer to your question "How do I keep from crying???" Is just go ahead a do it. I have certainly had my share of meltdowns, and it feels good to get the feelings out. I am generally a positive person so I only allow myself a certain amount of time to feel sorry for myself, then I shake it off and go on with life. I did as much research as possible, (this forum has been a sooo helpful), and it made me feel like I was in control of my life again,
:)
Lisa
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Hi Jackie:
Nice to have you on.
Time heals, even if you have an AN in your head. It really does.
Good luck on your wait and watch!! Kathy
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there is no reason not to be optimistic about the future, you have a treatable small BENIGN tumor. The treatment you choose will inconvenience you for a while, and your future will go on as planned. My AN was the same size as yours, and my first thought was, THANK GOD I made it to age 63 and my worst illness ever is a 10mm treatable benign tumor.I was back at work 2 1/2 weeks after microsurgery with no complications except for single sided deafness which does not seem to be a major problem for me. However, I did spend the time and money for a BAHA, which is a seperate subject. Best of luck to you.
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Hi Jackie,
I am sorry that you have to deal with this. I can share a bit about Kaiser in Oregon. My brother is insured through Kaiser in Oregon, and has had a number of treatments (we have NF2). He had radiosurgery at Legacy Emanuel in Portland that was paid by Kaiser. He has been referred to a Kaiser facility in San Diego for surgery. He also had surgery at a Kaiser hospital in Los Angeles that was performed by doctors from House Ear Clinic. I don't know a lot of details, but I believe that all of his treatments were paid as though he were being treated in Salem. I would suggest that you talk to your doctors about where they can send you. Also, my father had successful AN surgery at OHSU in Portland. Doctors McMenamee and Delashaw performed his surgery.
Please let me know if I can help in any way.
Jeff
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Sam
I feel the same way as you. While I am still having some problems wrapping my head around this tumor thingie I have always been healthy. No high blood pressure NO heart disease No nothing zip nada. I think that is why I take this tumor so hard.... I can't imagine being this healthy and having that booger growing inside my head! When I first learned and went online to do research I was devastated until I found this site!!!! I know have more knowledge about what to expect post-op and have made a game plan accordingly. I have absolutely no plan to discontinue my life as it is. Of course there are the "normal" fears but all in all I just feel that with a strong plan for recovery that there isn't too much that go wrong. My whole opinion is that prior to treatment it is YOUR choice, the surgery itself you leave in the competent hands of your team of doctors, the post-op recovery is YOUR choice also.
Good luck I know that you will come through this with flying colors.
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Hi Jackie,
I was busy this weekend and didn't see your post until today. I am in Vancouver and I had GK at Providence last April. If you ever want to call me to talk, please do. Collins30038@aol.com I can give you my phone number if you contact me. There is a support group at St. Vincent's, but I haven't been to one of the meetings yet. There was one this last Saturday that I would have gone too, but we had company.
Sue in Vancouver
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Hi JackieI remember feeling exactly like yolu a few years ago, when I learned about my unwelcome friend, deep in my ear!
I was in total shock when I was first told about this AN, and did not even know who to turn to for help. This board is just priceless for info and for encouragement.
I was SO scared! I felt like I had SO much to learn, to be able to make a decision that was best for my particular situation.
The ENT that found it ONLY mentioned surgery, didn't even mention any type of radiation surgery. I had to learn everything by myself. This seems to happen more often than it should with AN patients.
I was lucky to be put in touch with Dr. John Breneman, in a suburb of Cincinnati, Ohio, a radiation oncologist.
I went in for 28 seesions of FSR and was treated like a queen.
That was a few years ago, 3 MRI's ago, and I'm happy to report that not only has my balance been restored to normal, no facial paralysis, no adverse symptoms of any kind, in fact.
And I just had my 3rd MRI, and Dr. Breneman told me that it showed that the AN has grown much smaller. It is no longer pressing on my brain stem.
I have felt well, even during the month of radiation treatments.
Dr. Breneman is a wonderful doctor who is not only compassionate, but very skilled at AN's, as well. I would recommend him to anyone. He also does the Gamma, so you don't have to go every day like I did. I only live an hour and a half away in Indiana, so I opted for the FSR.
I wish peace and lots of good information to come to your attention, and the very best.
For me, I know it was the best decision I could make for myself. and I have no regrets.
You have come to the right place.
God Bless
Sue
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Hi again, Jackie
I forgot to mention that my AN was 2.7, if that helps.
Sue
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Hi Jackie,
Go ahead and cry, When I first found out I had a mini meltdown. Since I work full time and go to school full time my Dr recommended I take 2 weeks off work and she put me on Xanax (.25 mg). She said it is normal for us to grieve our good health and said to keep a journal of some of my fears and prayers. I dropped out of school until after my surgery and my work is being very supportive. My dr recommended I look for this group and I really am glad I found such an understanding bunch of coherts. Your home honey and we all understand how you feel.
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Jackie: Do not "keep from crying", let it go.....you'll be better off in the long run if you just let whatever your feeling now "hang out".
Kathleen
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Hi Jackie
Have you had surgery yet or when is it?
I am from Oregon myself and I was sent to Oregon Health Science University,
Awesome place! Everyone was so special ,but mine was on the left side and I had no pain what so ever. Doctor
Sean Mc Menomey MD did mine
Physicians Pavilion Suite 250 OHSU
er
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Jackie,
That's my daughter and my mother in law's name. You have made the first step. I was just diagnosed on Tuesday. Go ahead and cry. This forum is awsome. You need to talk to people to help you through this. I am in my beginning stages, and have not yet stopped crying. I have had many responses, even an email and phone number. It is soooo helpful to talk to someone in the same situation. My tumor is 3 cm, and truthfully I am scared, but, with a support group like this and lots of love, support and prayer, we will all get through this.
Laura
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Hi Jackie, it's been awhile since this post was active but I wanted to add my comments too, especially about the crying part. Just when you think you're done crying and can focus on something, it starts up all over again. I've gone through at least two boxes of tissues in the last two weeks since I got my diagnosis. What finally helped me was to give in to it and get it all out. I'm talking wailing, thrashing about, laying on the floor and kicking, that kind of thing. Followed up by a big slug of bourbon, of course. It was a real turning point for me and I find I can concentrate on my research better. Oh, I still get teared up but it's no longer because there's something in my head that doesn't belong there. I've been through therapy before and I just don't have the patience to talk it out, sometimes it's easier to give in to what the body wants to do. In my case, it was throwing a tantrum! Your dx came in February...how are you doing now?
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Hi Jackie!!!!
I know exactly what you 're going through but it does get better. Wanting to cry and feeling a little sorry for yourself is normal. When my other half gave me crap about the feeling sorry for myself part he was informed by my Dr. that I was entitled to feel this way. He said this kind of thing has taken down many of men alot stronger than he was and that it will pass (my guy has not said anything like that since). Sometimes I thought he should be the one taking some of my Prozac......They put me on 20 mg a day and it helped with the crying spells.
My AN was diagnosed 12-20-06 and I did all my research and had several dr. opinions, the size was like 1.5 x 2.6 x 2.7, something like that, it was on my left side and I too had diminished hearing. However, my balance was not off like the drs. were expecting it to be. The tumor had pretty much gotten all my balance nerve by the time it was detected. I am 43yrs old and my state of mind was get this thing out of my head so I can get on with my life. So, I had it removed translab on 3-16-07.
I had complete faith in my doctors and never really contemplated anything going wrong (I was most freaked out about being under for such a long time during the surgery, mine was 10hrs), my surgery went good, they were able to remove almost all of the tumor. Mine was pushing on the brain stem so to prevent facial problems my doc left a little. Afterwards the only really bothersome thing I can remember was being very thirsty. I don't even recall any pain at all. The first couple of weeks I walked as though I had been overserved(too much to drink) and I was able to go back to work pt-time within 3 weeks and by week 4 I was back full-time.
I am a new accts rep for a bank and also the asst cashier. When I get tired I still tend to stumble every now and then but besides that I feel I am doing great!!!!! People that did n't know about my surgery can't even tell I had it. My hair was really long, now its short and a little thinner on my AN side but you can't even see the incision. The only side effects still left are some numbness on the top left of my tongue (my AN was on the left) and some slight tingling on my left hand. Right after surgery my left arm was numb and my hand did n't work real good, but it is all much better. On the first post-op appt with my doctor he could n't believe I was walking in on my own.
I truly believe it is all in your attitude. I was determined to be positive. Not only for myself but for my loved ones that were taking care of me. Like everyone said you have time to weigh your options just as I did, but patience was not my best attribute(still is n't) but getting better. I looked at the different options but for me I just wanted it out!!!! Good luck with your decision and this site is a real Godsend for all of us. I can't even begin to tell you how much all the info here helped me...
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Hello Jackie.
I just noticed this topic. I am also from Oregon and I was sent to
Sean Mc Menomey MD
Physicians Pavillion Suite 250 OHSU
He is the Doctor that removed the Cerebellum brain tumor and the effects after wards, so I see him ...
Treatment received: follow-ups and MRI's, Hearing test
3181 SW Sam Jackson Pa
Portland, OR 97239
He mentioned he had done thousand, he laid out and explained everything, so when I left him I felt very positive and not afraid.
Carl Schreiner S. DMD at Mercy Hospital found my AN. My surgery was March 28, 2005.
eve
PS good luck
I am willing to talk if you would like to call me......